The pharmacist and medication adherence in the population with intellectual disabilities.
Medication nonadherence in the population with intellectual disabilities is not well described in the literature. People with intellectual disabilities (PWID) may have multiple morbidities and are often prescribed multi medications at a younger age than the general population . The medication use process in this vulnerable population is complex and is affected by many factors. Patients with intellectual disabilities present unique challenges for their prescriber, pharmacist and carer.
Many PWID have a diagnosis of epilepsy and emergency admissions for this indicate ineffective epileptic control and/or lack of adequate rescue medication plans. Convulsions and epilepsy play a key role as a cause of death in PWID (1). The consequence of nonadherence to prescribed anti epileptic medications has been associated with poor seizure control, increased morbidity and mortality along with increased time of hospitalization, worsened patient outcome, poor quality of life, and increased health care cost (2).
The Confidential Inquiry (3) into the premature deaths of PWID found the following frequently reported problems with medication
• People with intellectual disabilities not taking or not being given prescribed medicines, or not being given the correct dose
• Medicine being prescribed in a form the person could not take (due to swallowing difficulties) and family carers or staff devising unsafe solutions
• Lack of monitoring for side-effects or unreliable monitoring.
• A number of these examples demonstrated lack of adequate communication with family carers or staff.
Healthcare professionals need excellent communication skills to successfully engage with people with intellectual disabilities. Pharmacists should be aware of the following factors that can impact on adherence in this patient population:
1. PWID may not have the ability to fully understand the importance or impact of their medical condition or medications they are prescribed. Each person is unique and PWID may have a range of abilities and disabilities.
2. Many PWID have hearing, visual, memory and dexterity difficulties.
3. PWID can have various living situations where they are supported by a range of formal (paid) and informal carers. It has been found that PWID living in group homes ( where documentation requirements exist) had higher adherence rates compared with those who live independently or in a family home.
4. Socioeconomic factors may have an impact on the individual’s ability to adhere to a medication regimen. Health literacy levels of those providing direct care are important.
5. PWID and their caregivers may require additional person centred counselling and support. Pharmacists should be proactive and tailor counselling to the individual patient. PWID must receive information in a format that makes the information accessible to them.
6. Both formal (paid) and informal caregivers are very important people in the lives of PWID. They should be involved , with the permission of the patient, in discussions concerning medication. They may be in a position to facilitate the transfer of medication related information that may result in adherence to prescribed medication regimens.
7. Non adherence may indicate a failure in communication at some stage of the medication use process. Interventions must be tailored to the particular illness-related demands experienced by the patient in their ‘real world’ lives. Medication must be dispensed in a form suitable for the person e.g. swallowing ability, PEG in situ, taste/smell aversion, sugar free, etc.
8. Adherence to prescribed medication regimens may be a particular challenge in asthma, diabetes etc. Due to their cognitive impairment as well as comorbidities, they are likely to require support with self-management, including inhaler use, insulin administration and blood glucose testing..
9. PWID may not understand Monitored Dosage Systems (MDS) and may not have the dexterity to remove medications from MDS.
10. Formal and informal carers should receive training and have person specific protocols for the administration of rescue medications e.g. buccal midazolam, glucagon etc .
Pharmacists are in a pivotal position to positively impact on medicines optimisation and adherence rates in the vulnerable population with intellectual disabilities. Building relationships with these individuals and their formal and informal caregivers, developing effective person centred communication techniques, and monitoring adherence have the potential to optimise medication use in this at-risk patient population.
1. Glover G, Ayub M. How people with learning disabilities die. (2010) Improving Health and Lives: Learning Disabilities Observatory, 2013)
2. Getnet A, Woldeyohannes SM, Bekana L, et al. Antiepileptic Drug Nonadherence and Its Predictors among People with Epilepsy. Behavioural Neurology. 2016;2016:3189108
3. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): Final report.
Bristol: Norah Fry Research Centre, University of Bristol; 2013.
Bernadette Flood PhD MPSI